Early study found it had high accuracy, but experts say it won't replace colonoscopy anytime soon
by tralinbor on Mon Apr 30, 2012 09:16 PM
I am new to CancerCompass and my husband was diagnosed with GBM March 16. Had the surgery to remove the tumor March 14......surgeon was able to remove all visible tumor tissue. But, we are learning the term "visible" is the key word here. It's the tentacles/seeds that wern't visible that will rule his future. Have just finished jumping through all the hoops to get him into a Clinical Trial.......had the Apheresis this morning ...... will start the standard Temodar/radiation for 6 weeks tomorrow. He is 71, otherwise in very good health so we are hoping for a good outcome. However we are not sure just what will be facing us......what he will be going through. So far he is feeling fine.......just tires out easily so I know the radiation will amplify that.......beyond that we don't know what to expect. Have been told that since to this point he has not had pain, hearing loss etc etc he probably will not. His only symptoms were slight (very slight) facial droop on left and easily getting off balance and therefore falling. The Decadron stopped those symptoms. Well, I am new to chats like this and have probably taken to much valuable time from who ever is reading. Would love to receive some feed back as to what we should expect in the near future and the distant future.
by kat54 on Tue May 01, 2012 12:46 AM
Linda, I am a 19 year GBM survivor. Don't let the statistics get you down. yhere are several longterm survivors out here fatigue is really common the first couple of years. I will pray for a good response to treatment for your husband, Kathleen
by jon4156 on Tue May 01, 2012 03:58 AM
Fatigue is the primary issue related to radiation therapy. Radiation starts in small doses and increases over the course of the treatment so expect him to get more fatigued as he gets further into his therapy. If he has hair he will start to lose it about three weeks into therapy. Hair loss is caused by the radiation, not chemo. He will not be completely bald since the radiation is targeted and will therefore have patches of hair that remain. His hair will start to return four to six months after ceasing radiation. Most patients have no, to little, effects from the Temodar.
Radiation effects older people much more than younger people so expect him to sleep a lot and not have much stamina. Long walks or rides in the car, going to an all day event (fair or shopping), house work, yard work, etc, will all likely come to an end as the radiation progresses. Older patients do tend to have a higher risk for more major radiation effects such as confusion and memory loss as well, although many patients suffer with general confusion such as time of day, which day it is, and things of that nature.
His taste for food may change dramatically and many of the things he might have loved before he may not have a taste for. Vice-versa, foods that he stayed away from in the past he may now crave.
In general, the vast majority of patients get through radiation/chemo without many serious or long-term issues. His good health will give him a good edge and be a huge benefit. His radiation doctor should be able to give you a good description of potential issues and effects your husband may run into.
by tralinbor on Tue May 01, 2012 12:26 PM
Thanks for your information. Everything helps. Altho 72 Tracy is healthy (to look at him you would think more like 58 to 60) so maybe the fatigue will be moderate. We both need to get more exercise so are starting a plan to get on our eliptical machine every morning even if only for 5 or 10 minutes. His radiation is set for 1:40 every day. So, our thought is to rev up his metabolism with the eliptical in the AM hoping it may reduce the fatigue.
Thanks again for your response
by tralinbor on Tue May 01, 2012 01:08 PM
Thank you Kathleen!!!!!!! That truly is encouraging!!!!! Hope you are doing well. Did you get the standard Temodar/Radiation treatments? What was the location of your tumor and were they able to remove all the visible tissue?
by jon4156 on Tue May 01, 2012 03:55 PM
Don't overdo the exercise, take it slow and steady. My wife made the mistake of getting back on her treadmill and trying to exercise like she did before her craniotomy which only lead to overheating and nausea. A few minutes later she passed out in the shower. Nobody comes out of a craniotomy the same they went in as.
by dennis0612 on Wed May 02, 2012 08:16 PM
I wass diagnosed with GBM last march. SInce then have had surery but not all of tumor could be removed because of it's location. We asked our surgeon where the best place to go for followup was, he said Duke University Tische Brain Tumor Clinic. We contacted Duke, they took us nearly right away. They have been working with our local cancer treatment center since then for the Chemo Protocal. Idid have radiation a month after urgery but it didn't help, did Temadar with Radiation, still no luck. Duke set us up with Ovastin and CPT 11 chemo and within a couple of months the remaining tumor shrunk by 60%. My last visit to Duke was in December 2011, at that time they couldn't see any more cancer or tumor on the MRI. THey had me stay on treatment until June this year whn I go back. At that time they will do pet scan and MRI and hopefully cut back to just maintenanceon Chemo. I would really recomend Duke Uniersity Tische Brain Tumor CLinic. They do have a website. THey do answer phone and do call back.
Very best of luck and God be wihth you
Dennis P in COlorado
by tralinbor on Thu May 03, 2012 02:43 AM
Thanks Dennis, I will have my husbands Neuro-oncologist check into a consult with Duke. Hope all continues to go well with you. Sounds like you've got it well under control!!!
by kat54 on Thu May 03, 2012 03:56 AM
Linda they didn't have Temodar when I was first diagnosed. I only did radiation and stereotactic radiosurgery and 2 resections. my tumor was located right temporal lobe. I do pretty good.
by Ajdomin on Thu May 03, 2012 07:15 PM
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